Saturday, February 05, 2011

Help Spread Awareness -- CHD Awareness week 2011

There is an incredible amount of awareness and education surrounding adult heart disease, but very little about the number one birth defect or leading cause for birth-defect related deaths.

Did you know:

Congenital Heart Defects (CHDs) affects approximately 1.8 million families in the United States

CHDs are the most common birth defect and the leading cause of birth-defect related deaths worldwide

Nearly twice as many children die from CHDs as from all childhood cancers combined, yet research for cancer receives five times the funding

There are currently 35 distinct CHDs recognized

There is no known cause for CHDs and there is no cure. Only treatment, such as medicines, numerous surgeries and heart transplants.

Each year an estimated 1 in 100 babies are born in the United States with a congenital heart defect

1 in 10 of those are born with a fatal defect

My daughter, Allison Grace, was one of these statistics. Allison was born on April 29, 2002, with several complex heart defects. Prior to her diagnosis in utero, I could not even tell you what CHD stood for. Allison spent 32 days in the NICU before we were able to bring her home to meet her brother and sister. Our next few months were filled with doctor visits, echocardiograms, medicines, and a heart cauterization.

On August 9, 2002, Matt and I kissed Allison and handed her over to the nurse for what was to be her first of several open heart surgeries. This was the last time we held our daughter alive. On August 13, at only 101 days old, Allison earned her angel wings.

We never got to see our daughter take her first steps or say her first words. We never had her wrap her arms around us and say "I love you mommy and daddy." There is no "first day of school" photo. She will never graduate high school or go to college. Matt will never walk her down the aisle and give her to the man who has promised to love her forever. We were blessed to have had 101 days with our daughter. Many CHD parents are not as fortunate as us.

February 7 - 14 is "Congenital Heart Defect Awareness Week". Raising national awareness about Congenital Heart Defects is important on so many levels—it will provide hope for families of CHD survivors and comfort to those whose loved ones have lost their battles; it will inform the general public about the symptoms of CHDs and possibly save lives; and it will affirm the need for researchers and medical professionals to continue their work to improve the outlook for CHD patients.

Here are a few ways you can help bring awareness to CHDs this February.

As my long-time readers know, I blog every year about this important issue. If you blog, please make an entry this month helping raise awareness. You can even link to this entry.

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